Don’t Call It a Comeback!

 

Almost a full year ago, I started this blog as a way to communicate my medical status and feelings/experiences about all of it to family and friends I don’t see on a regular basis. I recently received a notice regarding renewal of my subscription to WordPress, and had to make a decision regarding the next year. I haven’t been writing much here due to uncooperative and uncoordinated hands, but I have been improving enough that I can rededicate myself to writing again, so I pulled the trigger and renewed. Y’all are stuck with me for another year!

As many of you know, I was recently hospitalized for 13 days. I was discharged on July 3rd, just a bit more than 5 weeks ago. The following is an update of my physical health since then, as well as some answers as to why I was admitted in the first place…

Since my visit to the Mayo Clinic in Rochester, MN at the beginning of June, I had slowly been losing strength and dexterity leading up to their official diagnosis and recommendations for treatment. Once that information was given to my neurologist, it was determined that I would need another new neurologist, this time a neuro oncologist, as I would be requiring treatments and drugs typically used in the treatment of various types of cancer. My Doctor simply wanted someone more familiar with these medications and procedures to administer them, and I understand and am grateful he referred me for those reasons. For the record, I am now seeing my 6th or 7th neurologist since the start of this adventure in February 2017.

My appointment with the new doctor, Dr. Kahn, was scheduled for June 21st. By that day, I felt incredibly weak, uncoordinated, and summarized into one word, defeated. My visit with Dr. Kahn quickly turned my thoughts back to positive ones, and after some discussion between him, myself, and my wife and boss, Meghan, we decided on a game plan that involved being admitted into the hospital at St. Luke’s in order to allow my first few procedures to be supervised and with minimal harassment from the insurance companies. Lucky for us, we were in the building next door, so it wasn’t a long trip for us. In fact, being experienced hospital-goers, we knew to grab a bite to eat before checking in, to ensure my sanity and to avoid excessive hangriness. Once that important task was accomplished, we checked in to what turned out to be a very nice hospital room. I was in the towers, on the highest floor of the hospital, with a view of the city and surrounding parks and gardens unavailable to almost everyone else in the hospital. If I was going to spend another 13 days in a hospital, and I truly hope I’m not, I would choose that room once again…A true luxury suite.

I won’t get into the details of the hospital stay, but I will say that the entire staff at St. Luke’s was incredible, especially the nursing staff, who took incredible care of me.  While there, we began my TWO new treatments, Plasmapheresis and an IV drug called Rituxan.

Plasmapheresis is a trip. The process of removing blood, separating , and then removing, all of the plasma from my body was done from a catheter  installed in the right side of my neck. This catheter remained in my neck for the duration of my stay. The whole process takes anywhere from 1 1/2 to 3 hours, depending on the flow from the 2 lines used, one for removal, and the other for returning the remaining blood, as well as saline and Albumin, the  main protein found in blood plasma. Based on my weight, I have roughly 6.5 liters of blood in my body, and the plasmapheresis removes about 4 liters of plasma, and with it, the antibodies causing my Cerebellar Ataxia. During my 13 days at the hospital, this process was done 6 times.

In between these treatments, I received small doses of Rituxan. The dosage of the smaller  treatments was 100 ml by IV, and on my last day, I received the full dose of 1000 ml. Rituxan is used in the treatment of certain cancers, and recently, it’s being used to treat several autoimmune diseases, including MS and rheumatoid arthritis and now, Cerebellar Ataxia. It works by preventing the body from creating antibodies…ALL antibodies, which leaves my body extremely susceptible to infection and illness. The plasmapheresis then removes the Rituxan, and the cells it’s attached to, from my blood, and then 2 days later, I receive more Rituxan.

Since being released, I have each of these treatments every 2 weeks. I am happy to be receiving this aggressive treatment, and to this point it has helped immensely, although many of the improvements are not noticed by those who are not around me every day, so I’ll try to briefly describe them here:

Improved speech – This is the one EVERYBODY mentins, because it is the most obvious and noticeable improvement my body has made. It was really awful,  but now it’s kind of bad, and at times, pretty decent.

Increased strength – I go to Physical Therapy twice on non-treatment weeks, and only once during treatment weeks. I’ve been receiving great feedback from my therapist  regarding my  strength. I’ve recently started lifting weights while there, mostly lower body stuff, and exercising at home (almost) daily. The focus is on strengthening the legs and core, and it is working,

Increased energy –  2 months ago, I couldn’t stay awake past 7:30, and lately, I’ve been staying up well into the double digit hours. More energy is pretty self-explanatory.

Increased stamina  – I can stand for longer periods, meaning I can accomplish more on my own, for example, stairs, showers, doing dishes, cooking, etc. I’m not Superman  by any means, but I can do much more than I could prior to entering the hospital.

Increased balance – I recently  stood for 30 seconds with my feet together, eyes closed, and holding onto nothing. I would have been on my ass within 5 seconds 2 months ago. I took 7 steps, no walker last night. I only traveled 2 1/2 feet, but I did it nonetheless.

These are just a few of the improvements I’ve noticed, but there are many more, I just haven’t figured out how to put them into words  that someone not experiencing then would understand. I would call my progress substantial, but after reading what I just wrote, it doesn’t seem like it. Just know that it is.

I’ll continue posting updates here    , and more frequently now that I can type a LITTLE BIT better. Please follow my blog!